Sunday, January 9, 2011

Frustration

This week has left my quite disgruntled, and feeling like nothing is moving fast enough. For those of you who have been through the adoption process, it's like when you rush and rush to get the paperwork done, and then no one else has that urgency and you are forced to sit and wait for things to happen.

We have been attempting to get a wheelchair for Mason since August. It's not that we don't think he'll ever walk, but he's very heavy, and I can't carry him everywhere anymore. He hates a stroller because he feels all scrunched up, and the joggers force him to lean back, which he is completely uninterested in. He will probably always need a wheelchair for long distances, and it will certainly be useful for school. We switched companies because the first folks we were with were essentially useless. They were rude, gave us no options, and our phone calls went unreturned for up to 1 month. Completely unacceptable. We are now with a company whose rep. has been lovely to deal with. We felt like we had options, that he listened to us, and understood what we wanted. He even got a chair for Mason to try - a chair that we were interested in. So that is progressing, but is probably going to take another month or so to actually get the chair.

We have finally ordered orthotics for Mason. In my opinion it's about time. He wants to be on his feet now, is pulling himself up all the time, and prefers to be in his gait trainer at school. But again, this has been in the works since September! The company that his orthopedic guy faxed the prescription to never called us, even after I left messages. So our PT is also an orthotist and got him all measured. We were supposed to have them within 7-10 days. That was nearly a month ago. I don't think it's anyone's fault, it's just one more thing that is taking longer than we thought.

The PT eval at school was done after repeatedly reminding CDS - "it's in his IEP, you need to make it happen." They didn't want to pay for an initial eval to begin his 1/2 hour of consultation with the school each week. But it did happen. Now, I'm trying to get a hold of the PT to talk to her about the results. It's been 2 weeks, and we still haven't connected. She's on the road a lot and I can't answer my phone between 11:30 and 3. So it isn't really anyone's fault, but it's maddening!

Another frustration - we got a letter from his school stating that they forgot to get consent for psych testing that had already occurred in the fall. Would we please sign consent now. Seriously?!! Would have been nice to know that someone was evaluating my kid, and to have had some say as to who did it, or at least be able to do my own research on their provider. Not happy about this.

And the kicker this week was the eye appointment. When we accepted his referral, Mason had a clearly crossed eye. Although it has certainly improved, it still goes crazy frequently, and at our last appointment we were told that this is what causes him to constantly tilt his head back. We initially took him to a local eye doctor, who told us that he didn't see anything wrong. REALLY?!! When we had his speech evaluated, his speech therapist was very concerned about it and told us to get a second opinion. We went to a pediatric opthamologist who told us that he had "A shaped strabismus" and would need surgery, but wanted to wait until he got a bit more settled here. Time and time again we are asked by providers "what are you doing about his eyes?" He recently had a PT eval at the school he attends, and when my mom picked him up, that was the first question from the PT. We had that appointment this week. I took all morning off from work to drive down there expecting to finally get something set up to take care of this. I expected them to dilate him, because with Mason, I feel like that's the only way to get a good reading on it. They didn't. Instead they wanted him to point to these teeny dots on a flashlight (hello! he doesn't really have great fine motor skills). Then they wanted him to identify these abstract black and white photos of everyday objects. He's a concrete guy. The abstract thing didn't work for him. Lastly, the doc was trying to get him to follow that little pen light. Instead of talking to Mason and asking him to follow the light, he kept flicking this little pig thing around and expecting that to grab his attention. Mason could not have cared less, and I don't blame him. I was most irritated, because I want Mason's providers to actually show an interest in him. And there was none shown. He never spoke to Mason on any sort of level and I felt dismissed. He said that he didn't get a good reading, that he didn't want to do surgery right now, nor did he want to try glasses or patching. He stated that his head tilt looked more to the left today (I have no idea what that meant, and seriously, he was with Mason for like 2 minutes!) So we wait another 6 months before going back.

It's not that I want my child to have surgery, but I do want something to be resolved! He's got enough challenges, so if we can fix something that may affect his fine motor skills, his posture, and adds to his struggle, let's do it already! I'm sick of wating for everything to happen!

I just felt like I did a lot of running around, calling around, and got nothing accomplished at all. So this weekend, I'm forcing Daniel to help me clean the basement. That way I can feel like some progress has been made on something in our lives :)

6 comments:

Wow. I would get a second opinion on his eyes. That doctor sounded terrible. I have taken 2 of my kids to a pediatric opthamologist and both of them had their eyes dialated (even Ace whose vision is only slightly poor). I would be furious with "I couldn't get a good reading so come back in 6 months"! So sorry and I hope you find a solution soon.

Kristy,That sounds so nerve wrecking.It is so hard today to find a true doctor that really cares and tries to help you.:( It is aggravating.I totally understand you. Take a deep breath and maybe this week you will have a better week and get things happening to help your son. The only thing I would know to do is to call on God to help you find the right doctor for your son's needs.:) Hang in there!! Gidget

I'm smiling at your last paragraph . . . I clean when frustrated (very unlike me, since I'd rather do about 100 other things than clean!).

You are showing such perserverance and commitment, Kristy. You're doing a great job being Mason's advocate -- I only wish it were easier to get some results. Hang in there. You are one tough mother, with so much love for all your kids. Keep pressing on! And I'm with Gidget -- it can't hurt to pray that God will drop just the right medical people in your lap.Love,Nancy

Wow, Kristy! You didn't unleash on me nearly enough yesterday...you were so calm!! I have to agree that you need another opthamologist or at least light the fire under your current one. Both of the ones we have seen for S have dialated her the first visit, and the one we see here does it every other visit and we see her every six months. I was told by our opthamologist that the earlier you do the strabismus surgery the better. The longer you wait you increase the chance of the brain shutting off it's connection with the eye completely. Not to scare you...but our dr said that usually happens by age five if the eye hasn't had some kind of intervention. I know you will get this figured out for Mason. You just might have to get all mama bear with the eye doc. Yuck. I hate that part of advocating.

Kristy,The wheelchair thing can take months. The AFO's do take about a month to make (or at least by our provider even when they tell me about a week). The Eye Dr is a quack. Prasun had his eyes dilated. They did suggest patching for us and it has worked great. Prasun leans his head back all the time. It is his "laziness" though. He doesn't want to use his core or any important muscles for long because he is so weak.I'm so sorry you are frustrated. It takes forever for all of this stuff to work its way out. Also you might me amazed at how far Mason will be able to go in his walker. I've seen Prasun walk for 2 hours straight before. Some days though he can't get out of the bedroom crawling because he is so tight. Call me if you need to vent.